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Still Alice author’s new novel looks to draw an emotional, intimate portrait of ALS

“This is about facing your own death. And we as a culture don’t want to look at that,” Lisa Genova says of ALS. (Bernard Weil / Toronto Star)

For her new novel Every Note Played, author Lisa Genova interviewed 12 men with ALS. Eight of them died before the final manuscript was finished.

“This was the hardest part of this disease for me,” Genova says of the illness that gradually paralyzes people as the brain loses communication with the muscles. “This is about facing your own death. And we as a culture don’t want to look at that.”

Not unlike her blockbuster debut Still Alice, which tells the story of a university professor grappling with early onset Alzheimer’s disease, Every Note Played is about Richard, a pianist of international acclaim who realizes his life is about more than the next standing ovation after he is diagnosed with ALS (amyotrophic lateral sclerosis). Past relationships are revisited when his ex-wife becomes his primary caregiver.

Genova was famously a neuroscientist before self-publishing Still Alice, selling copies out of the back of her car. The writer/director who adapted it for film, Richard Glatzer, was diagnosed with ALS shortly before taking on the project. Their friendship inspired her to write the character of Richard Evans, so named for her unshakable feeling that the late Glatzer wanted the character named after him.

From there, she threw herself into research, reading textbooks, scientific literature, memoirs and self-help books, along with shadowing neurologists and nurses. Her interviews with people who had ALS were profoundly intimate. At one point she observed a man as he was bathed and dressed by his personal care worker, a moment they’d organized through an email chain with the subject line “The Full Monty.”

The research is part of Genova’s commitment to accurately portray the experiences she writes about. “The worst fear is, will they be offended?” she says of those with ALS and their families. “And I certainly don’t want to hurt someone who has already been hurt by this disease.”

Lisa Droppo has closely observed ALS in her role as vice-president of client services for the ALS Society of Canada. After reading Every Note Played, she was impressed by how much of the ALS experience Genova captured, both from the perspective of the person who has been diagnosed and the perspective of the caregiver.

“I thought this was a really strong reflection of what happens for people,” she says. “One of the things that I have thought about a lot is that although everyone will die from this disease, people aren’t planning for the end of their life but planning for the rest of their life. Lisa’s story is a good reflection of that.”

When Genova was sending out query letters for Still Alice in 2005 and ’06, literary agents would tell her there wasn’t a market for a novel about Alzheimer’s.

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“People are afraid of this disease and people don’t want to talk about it,” she recalls hearing from publishers. “That has shifted a bit.”

That is something that Kayla Whaley has observed. As senior editor at the online magazine Disability in Kidlit, she’s seen recent strides, most noticeably in children’s, middle school and young adult reads, thanks to editors and agents who are actively seeking out positive representations of different abilities written by authors with lived experience.

“Children’s literature is a little ahead of where adult literary fiction is, where I don’t think that conversation has been started to the same extent,” she says, also noting progress in the sci-fi and fantasy genres.

She has noticed Twitter callouts from agents using the hashtags #MSWL (manuscript wishlist) and #OwnVoices (authors from marginalized communities writing characters that reflect their lived experiences) that call specifically for representation of physical disability.

“Disability was not always included in the beginning of that conversation as a point of diversity that we should be looking at,” Whaley says.

"This is about facing your own death," Lisa Genova says of ALS. "And we as a culture don't want to look at that." (Bernard Weil/Toronto Star)

Chelsea Jones, a sessional instructor in the School of Disability Studies at Ryerson University, says physical disability is not always given the same consideration as other marginalized voices.

“Writers have come under fire for writing about race and representing experiences outside of themselves and outside of the communities that they have been in touch with,” she says. “But we tend not to apply that kind of rigour to authors who are writing about disability.”

Whaley finds that disability narratives in adult fiction usually fall into two camps: tragic or inspirational.

“It’s either someone who has acquired a disability and is working through it to whatever the solution may be, or a Me Before You situation where the character dies,” she says, naming the 2012 Jojo Moyes novel. The 2016 film adaptation was protested by disability activists as a “disability snuff movie.”

Genova’s novel doesn’t daringly deviate from that narrative formula: an able-bodied person adjusts to a life of physical disability, experiencing personal growth in the process. Perhaps what it lacks in originality, Genova’s work can compensate for in influence.

“I see the power in using fiction as a vehicle for empathy,” she says. “The massive increase in funding for Alzheimer’s in the United States, I believe, is in part because of what happened with Still Alice. People recognized this was a disease we need to talk about and the movie helped people talk about Alzheimer’s.”

She hopes that she can be similarly influential in raising awareness about ALS, fulfilling her pledge to the 10 men and two women who shared what living with ALS has been like for them.

“Part of the hope for these folks is that I would tell a story that would reach millions,” she says.

“This could be a story that might impact the world and help them feel something about ALS, which would then in turn maybe lead to both social change and advancement in medicine. And not just in an intellectual way help them understand ALS, but it would hit them in their hearts as well.”

This online story has been changed from a previous version that incorrectly stated the number and gender of people Genova interviewed for her book.

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